Thoughts from a Quarantined Autistic

I’m writing this post from self-quarantine, practicing social distancing. Luckily, I have no COVID-19 symptoms (so far). I am isolating myself to help slow the spread of this deadly virus, as well as protecting myself as I’m in the higher-risk category. I’ve had a lot on my mind during this first week of isolation and have been struggling with some pretty tremendous mental health concerns.

Despite all of this, I’ve also found some ways to find some calm and order. I want to share some of them with all of my readers—Autistic or not. As a multiply disabled, introverted Autistic, I have a unique perspectives to offer. I generally don’t leave my house much when I can help it; I have a lot of online friends; I’ve been bed- or couch-bound countless time in my life. Social distancing is kind of my default, even if it’s not always my choice.

While my thoughts aren’t going to help everyone, they may help someone. And that’s all I can hope for.

1) Keeping any routine possible; Adapting what has to change

This is something I practice anytime I cannot follow my normal routine in general. Keeping to a routine—even an adapted one—is key to my mental health. Because I also have ADHD, that can sometimes be tricky, but routine doesn’t have to look like a rigid frame. It can be bendy and flexible if that’s what works for you. A step in your routine can be as simple as “In the mornings I will do something relaxing before work.”

Even though I am working remotely now, I have been doing my best to get up and go to bed at the same times. I eat breakfast at the same time, and start work at the same time. That familiarity and rhythm brings comfort and certainty in a very uncertain time.

But what about things that have to be changed? For example, what if you usually visit your favorite coffee shop with a friend after work? In cases like that, I Skype that friend, brew some tea together and talk as usual. Usually go to the gym at night? Look up YouTube videos of workouts you can do at home, and work out during your usual time.

It’s not the same, but it’s familiar and that can bring calm. It’s taken several days of my “new normal” routine to feel natural, but now it brings me a lot of comfort when I’m anxious.

2) Putting locks on social media apps & limiting news

I often compulsively check social media during my downtime, partly because so many of my friendships are online, and partly because I find social media to be a nice distraction. But right now, that’s not the case. I find myself getting sucked into hyper-focusing on news, perseverating on local events, and worrying about friends and family (and everyone in general).

I ended up setting up Screen Time on my phone for all social media apps. That’s a setting on iPhones that can help you control your app habits; there are similar things for other phones. I gave myself a 30 minute cut off for social media. That means when I reach that 30 minutes, a notification will pop up and let me know. I then have the option to snooze that reminder for 15 more minutes of viewing time, turn it off for the day, or just close that app.

I’m finding that this helps with executive dysfunction and getting trapped in a loop, losing hours of time to stress and panic. It’s nice because it also doesn’t make me feel out of control. I am able to dismiss the reminder, and it will remind me again after 15 minutes when I can then decide again if I need a break or not. It holds me accountable, but also gives me the power of choice when my brain can’t necessarily regulate itself.

3) Dual tasking when I need distraction

I’ve found that if I try to sit down and do something to relax and distract myself from the current situation, I will end up either doing something else by accident or heavily dissociating. (Sometimes both because I’m an overachiever.) That’s not helpful, and actually really distressing!

In the last week I have turned to giving my brain dual tasks. For example, I will cross stitch while listening to the TV. I’ll listen to an audiobook while I play a simple game. Color and listen/sing to music. That’s been the key to me sticking with a distraction long enough to actually de-stress! I’ve finally been able to relax now with that strategy and it’s doing a world of good for my mental health.

4) Being gentle with myself regarding mental health

(Content warning: eating disorder, OCD, mental health spirals, etc.)

In the last few weeks, I’ve definitely noticed an uptick of mental health issues in myself. My eating disorders—even though I’ve been doing really well in treatment—tell me that if I eat too much we will run out of food. Then my husband will have to leave the house and of course he’ll get sick and he’ll die and then I’ll suffer and then I’ll die… Oof. The eating disorder is latching onto very real fears and just running with it.

I’ve also seen a huge relapse with obsessive compulsive issues. I had pretty severe OCD as a kid, but have recovered to the point that I have only really have mild OCD tendencies. In the last week in particular, I’ve really struggled. For example, one night I got “stuck” in the shower for 30 minutes, washing my whole body several times, then standing there as my brain told me I still have the virus on me and if I get out now I will murder everyone I know and love. I couldn’t seem to make my body move. So I thought maybe should call to my husband to come help me, but my brain said if I did, maybe he would trip on the way up the stairs and hit his head! (OCD is a real piece of crap.)

My agoraphobia—which I always struggle with to a certain extent—is absolutely and positively thrilled to have a logical reason to not leave the house. So I struggle to even go on short walks. And I won’t even start on anxiety because… it makes me anxious. Hah!

So yes, it’s been really rough. But ultimately, I have realized that I gain nothing by being critical of myself. This situation is hard. It’s scary. It’s really horrifying. And my brain is actually doing it’s best right now. Strange as it sounds, it’s trying to protect me and it’s just sort of… glitching. It’s similar to the concept that I talked about regarding my chronic illnesses in 28: Chronic Illness: Am I “Broken”?. My body and mind are compromised. And they’re doing the best they can right now. What I can do is be gentle and give myself time to rest and recharge.

5) Positive output

The last thing that’s been incredibly helpful for me is making something positive. My husband and I made a cover video to share with our loved ones. It started as us unwinding at lunchtime and evolved into my husband writing a piano arrangement. It’s not something I expected to share with you all, but what the heck:

 


We made the video because we needed it ourselves. We feel so helpless and powerless. We did it to uplift our family and community, but we also just needed to do… something, anything! Something to put a bit of happiness and hope out into what is an extra dark and scary world right now.

Putting something out into the world doesn’t have to be extravagant. It can be sending an email to a friend, making a piece of art, sending a gift to a neighbor, or donating money to someone in need… something to remind yourself and others that the sun will shine again.

A picture taken in the woods during fall when the trees are radiant orange. The sun shines through the trunks toward the viewer.
“Tomorrow”, taken by Alex Earhart

29: When You Don’t Believe I’m Autistic

Welp, it finally happened. [Beware (or enjoy?): snarky post ahead!]

Over the last few years, I’ve been coming out to family, friends, coworkers, etc. in an effort to be more authentically me, mask less, feel comfortable in my skin, and help others better understand my boundaries and needs.

I have been very, very ridiculously lucky to have mostly positive reactions when I tell people I’m Autistic. At the very least, reactions have been surprised, but affirming. But I brace for the reaction of each new person I tell because I know that people routinely react ignorantly to Autistics coming out.

And it finally happened. I told someone that I wasn’t able to take on more of a workload because I’m Autistic and am feeling very overwhelmed. And her response?

Well—laughably—she first completely and utterly ignored me and continued on with the monologue she was currently wholeheartedly invested in. Then about 30 full seconds later she paused and said:

“Wait. You’re on THE SPECTRUM?!? Yeah, okay… we’ll go with that.”

She may as well have rolled her eyes given the tone she used.

She then plowed ahead with her monologue before pausing again and saying:

“Really? You’re on the spectrum? Weird, I can always tell when people are. I work with kids who… never mind.”

So, maybe not the most ideal reaction. (Yes, this is sarcasm. I can do sarcasm.)

Honestly, what I hated most about the situation was my reaction and the feeling of helplessness. I wish I had been able to directly call her out on it, but that’s something that takes time to learn to navigate in real time. I’m the type of person who needs time to really process a situation and react later. The type of person that takes a few weeks of simmering and thinking about a situation and then write a snark-filled post after fully processing.

And that’s okay.

What’s not okay is how this person reacted to me.

So let’s unpack her reaction together, shall we? Class is in session! (Still feeling snarky…)

A photo of a black woman with glasses in professional attire, paper in hand, teaching while writing with a marker.
Learning time! Photo by rawpixel.com on Pexels.com

1) “I can always tell when people are Autistic.”

Yeah… No, you can’t. I mean, sure, you probably can some of the time. But I’m sitting here right in front of you. I’m Autistic. And you didn’t know. Ergo… no. You cannot always tell. Autistics are all around you; you just don’t realize. So yeah. There’s my “highly logical brain” for you. Sending you common sense. For free. You’re welcome.

Okay, on to the next one!

2) “I work with kids on the spectrum./My brother’s best friend’s cousin’s niece has autism.”

Ok. Well, first of all… I feel bad for those kids. (Is that mean? That sounds mean.) Honestly, anyone that ignorant needs to be further educated before working with Autistic people.

Literally every person is different. Didn’t know I had to say that, but apparently I do. Why would you expect me to be like another Autistic person you know? I don’t shout “You’re neurotypical? But you’re nothing like my friend Sally!?” into your face while maintaining a disgusting amount of gross eye contact. Because it’s silly. Because it doesn’t make sense. Because it’s absurd.

Bottom line–humans are all complex and highly different beings. No two of us are exactly alike. Why on earth would you expect two Autistics to be exactly alike? As the popular phrase goes, “If you’ve met one Autistic person… you’ve met one Autistic person.”

3) “Yeah, ok. We’ll go with that” (insert nasty, sarcastic tone and/or eye roll for bonus jerk points)

Ohhhhhh boy.

So, first of all, you’re heavily implying I’m a liar. You’re implying that my psychologists and therapists are incompetent or misdiagnosed me. Or that I somehow tricked two mental health professionals doing independent assessments of me.

But more than that, you are denying my neurology. You are denying the entire structure of my brain, the way I think, and the awesome things that come along with that. You’re also denying the terrible things that come along with it. You are denying my experience.

You are being ableist, denying my struggles of past and present, denying my identity, being condescending and patronizing, and just generally being an unkind human being all in one go. It’s not a good look…

Bonus “Avoid alienating or pissing off an Autistic” Guide

4) “You hide it so well!/I never would have guessed!”

This. is. not. a. compliment.

I mean, I guess I kind of slightly sort of maybe a little get where people are trying to come from with this? Finding out that the person in front of you is a literal coping and masking wizard who is 1000% of the time exhausted is a lot. It is a feat. But it’s also messed up.

Think about it this way. As a kid, I knew very quickly in school that I was different. I didn’t have a name for it, but I knew. I was bullied relentlessly and I didn’t understand why. I even had a teacher who routinely bullied me.

It was so bad that I started to try to MacGyver together social camouflage to avoid sticking out. (Read 1: Operating Manual for a bit more on that.). My masking, ability to “pass” as neurotypical, and generally inflict extreme harm on my introverted self in order to avoid bullying and aggression is not only an exhausting production that I just don’t know how to turn off, it is the result of years of agony and bullying. Craving friendship and acceptance so much that I mimicked peers I admired. Subconsciously suppressing my neurology, personality, and desires to get by and survive.

After all, that’s such a huge part of why I started this blog—to explore who I authentically am at my core. Because I have had to put so much of who I am away in a little box on a shelf in the back of my mind. And I’m just starting to unpack that box now.

5) “You’re so high functioning!”

There are a few phrases that are bound to make most Autistic people angry, and this is one of them. For one thing, functioning labels are just completely skewed and narrow. Functioning labels hurt all Autistics. Period. (I’m not going to go too far into this, but will insert a link once I find a good one.)

You don’t see the emotional, mental, and physical fallout from my exposure to things like overstimulation, sensory overload, long periods of social activities, or a scary experience. You don’t see my meltdowns or shutdowns (usually) because I have learned to plan out my energy and ability to cope for any given situation or day. This is closely tied to Number 4. Performing “high functioning” comes at a high cost and is just not accurate.

6) “I’m so sorry.”

Don’t be. I love me. I love my neurology (most days). The issues I deal with are related to society:  ignorance, exclusion, assumption, aggression, bullying, inaccessibility, sensory assault, ableism, etc.

7) “Oh, like Sheldon from Big Bang Theory/Rain Man/(Straight white cis man or boy)?”

No.

A photo showing two people sitting at a table, having a discussion. There is paper and pen in front of them, and one person is actively listening to the other.
Listening time! Photo by mentatdgt on Pexels.com

How you should react to someone divulging information to you:

You may find yourself saying, “Okay, Sara. I think I know how to lessen my chances of pissing off an Autistic. So what do I do and say?” While I can only speak from my personal preferences and wishes, these are some things that I would personally love to hear when I tell people:

–Thank you for telling me.

–Thank you for trusting me with this information.

–Cool. My partner is too. (Notice how different this is from the comparison above in Number 2)

–I don’t know much about that. Are there any resources you recommend to learn more?

–I have some questions. Is it okay for me to ask you some?

–How can I better accommodate you?

–What are your needs? How can I help?

28: Chronic Illness: Am I “Broken”?

Chronic illness is something that I talk about a lot in therapy. With diagnoses of fibromyalgia, chronic fatigue, PCOS, Hashimoto’s Disease, a narcolepsy-like sleep disorder, and more, it’s not hard to see why.

From the age of about 12 I’ve been extremely frustrated with my body. And for many years now, I have loudly and vocally proclaimed my body to be “broken,” daring anyone to have the gall to disagree with me.

In one therapy session, my therapist finally did. She asked me why I use the word “broken.” Game on! Well, you asked for it, I thought as my thoroughly thought out list of angsty anecdotes jumped straight to my tongue.

I launched into the daily frustration I feel with a myriad of symptoms that fluctuate unpredictably, the pain I feel 24/7, fatigue that sometimes leaves me bedridden, and all the other fun-filled things that come along with chronic illness. I talked about the things I miss out on, the things I may never be able to do, the toll it takes on my relationships, and the mental health burdens I have as a result.

As I described it, I all but dared her to contradict me… and she did. “Over the next few weeks, I want you to think about the idea of your body being compromised rather than broken.” She asked me to come back next session with my thoughts on the process and left me a lot of freedom in how I approached the task.

I must have looked at her like I do when people suggest that yoga can singlehandedly cure all of my chronic health issues, but I trust her, so I agreed to at least try. I decided to go about my usual routine and wait for frustration with my body to inevitably surface in my mind.

Over the next few weeks I challenged myself to reframe my negative thoughts about my body being broken to my body being “compromised.” To be perfectly honest, I didn’t really expect much out of the exercise, but I was surprised to have a powerful epiphany. The shift from “My body is broken” to “My body is compromised” is incredible and not one that I had anticipated.

“Broken” says that my body is to blame. “Compromised” acknowledges that my body is fighting along with me.

My body is functioning. It might not function in the way that I want. But I am alive. My body often doesn’t have the energy it needs to do what I want it to… but every day it does what it can for me, even if that’s sleep all day. Every second of every day it is keeping me alive, running bodily systems I know little about because I hated biology class. (oops) It endured 18 years of disordered eating and still kept going.

My body is doing its best.

The longer I practiced correcting my mental self-talk, the more I realized how ableist “broken” is and it made me want to tackle and reshape my thinking even more.

I started shifting my frustrations toward the illnesses themselves, and began to think of my body as a vessel that is just trying its best to continue despite daily challenges. The obstacles I face on a daily basis…are things my body is also enduring. Despite the false pain signals it has to process 24/7, despite the fatigue it battles through with me, despite the probably-ever-present warning alarms it must get tired of hearing all day… it functions as best as it can.

It’s amazing how such a subtle difference can make me feel less trapped, more hopeful, and more at peace. Instead of feeling bound to a broken machine, I feel more like I am going into battle with an old, tired, but badass friend.

26: Sick While Autistic

Ah, cold and flu season. Never fun for anyone, but doubly less so for many Autistic people. I’m currently experiencing a particularly nasty virus and it’s been an interesting time reflecting on sickness while in bed with a virus for the first time since my diagnosis as Autistic. I’ve noticed a lot and it’s helped me unpack a lot of shame (and a little trauma) from a childhood of fairly frequent illnesses.

[Content warning: brief mention of trauma (in last bullet point), mental health complications of being sick (second bullet point).]

So let’s unpack some of it together, shall we?

    • First let’s consider that many Autistic people have chronic illnesses and conditions like fibromyalgia, chronic fatigue/M.E., Ehlers-Danlos Syndrome, etc. We may seldom feel well on an average day, but may have learned to more-or-less cope with being chronically ill. Add in extra unpleasantness that only exacerbates our symptoms and we are champions for getting through any additional illness.
    • Consider also that many of us also have chronic mental health obstacles like anxiety, depression, PTSD, and more. The point made above applies equally to mental illness. We have a lot to deal with on a healthier day and added illness makes that fight more difficult.
    • Give some thought too to the terrible sensory components of being ill: inflammation, pain, fever/chills, aches, pressure, various disgusting fluids, the feel of a stuffy nose, sweating, headaches, being more overwhelmed by sounds, changes in sense of smell or taste, etc. For someone with Sensory Processing Disorder, that can be a lot. It can be so incredibly overwhelming and can induce panic and anxiety attacks.
    • When sick, routines get chucked out the window. Many Autistic people thrive on the familiarity, predictability, and comfort of routine. One of our biggest comforts that allows us to mask and tolerate a good deal is suddenly and completely thrown out the window!!
    • Brain fog from feeling unwell makes it incredibly hard to mask and communicate. Masking and communicating as an Autistic person can be a near-constant game of mental gymnastics and being sick makes it even more difficult to play that game.
    • Everything listed above puts us several leaps closer to meltdowns and shutdowns. People who might ordinarily have a few a year might find themselves much more likely to have them. (Also see my piece on 2: Meltdowns & Pillars to understand why this is.)
    • We may experience extreme changes in our ability to do things we normally can. We may struggle to speak, regulate or identify emotions, eat unfamiliar foods, avoid meltdowns, communicate efficiently, etc. And those abilities may change rapidly and often while sick.
    • Lastly, consider the fact that many Autistics may have some level of trauma associated with being ill for a vast variety of reasons. I myself had several horrible bouts of illness as a child that were frightening for me. I also have gone through more medical testing than many people twice my age and things associated with being ill can make me incredibly scared and childlike.
    Phew, that’s a lot going on, right??

    So what can we as a sick Autistic or a caregiver of a sick Autistic person do?

    1) Validate and praise

    Really look at the list above of reasons why being sick as an Autistic might be extremely challenging:

    -If you are being hard on yourself, please try to be patient with yourself and validate your feelings. It’s really hard to be sick. You’re doing well, and you’re going to get through this! Make a list of things you’re doing well: taking meds, sleeping a lot, drinking fluids, keeping calm, etc.

    -If you are caring for an Autistic, please have patience. We might seem “dramatic” or “childish” from your perspective, but I challenge you to exercise empathy (lol here) and patience as you imagine what we may be going through. Validate the Autistic’s experience by saying things like “This is a really hard thing that you’re going through, but you’re doing such a great job. I’m proud of you for hanging in there.” Praise the efforts of the Autistic, even if they seem like small things to you. Do NOT make comments belittling the experience. If you need to, step away for a while (when safe) and practice some self care until you are calmer.

    2) Consider temperature, texture, and taste

    When ill, the very best things for me personally to combat the unpleasantness of sensory discomfort are the three T’s:

    Temperature: Using a cool washcloth or a heating pad can give me some feeling of control over my body and my pain. Drinking a hot or cold liquid can also help to ground me and take some panic away. Taking a shower or bath can help majorly too.

    Texture: Soothing stuffed animals, squishing silly putty, wearing fuzzy PJs, etc. are all small things that can make a big difference in keeping calm.

    Taste: Using hard-candies like peppermint can help remind the body to stay present! (Be sure that you will not fall asleep and choke!) Sweet drinks or teas help me a lot too as do flavored things like Jello or similar.

    3) Make a surrogate routine

    Keep whatever you can in a routine–mealtimes, bedtime routines, etc. But of course many things will not be able to happen as usual. Try to make a temporary schedule with similar activities. For example, schedule times to read together when English class would normally happen.

    If that fails, make a temporary schedule anyway! Examples of things to include could be: take temperature, take medicine, drink fluids, watch TV show, sleep, rest time, Skype friend/family, shower or bathe, sensory time, etc. Knowing what’s coming up with some degree of certainty can help so much and it’s great to have a reminder of when you need to take medicine and when you last drank fluids.

    4) Chart a sick calendar

    For whatever reason, I know logically that I will get well, but on some level, I don’t. Being sick is such an all-consuming, exhausting, and sometimes scary thing for me. I need reassurance that I will get well soon.

    One thing I suggest is printing a week calendar and asking a loved one or doctor to help write out things like when the illness started, benchmarks for when the Autistic will probably be able to do certain things again, and a goal when they will probably feel much better. Feel free to make the benchmarks a period of a few days if you worry about making false promises.

    Knowing how long you have to endure something is the biggest step toward tolerating it.

    5) Make being sick less awful

    Pamper yourself or the Autistic. Watch some TV or a movie. Eat something yummy you normally save for special occasions. Play some video games.

    Now is a time for rest and relaxation. Put off whatever you can until another day. Those emails will still be there when you’re well. So will school projects and deadlines. If something is overwhelming, put it aside and do something to “indulge” in being sick: take naps, play games, etc.

    Take care of you because you are so so important.

    [Featured image description: A green plant with thin, long leaves with white and pink spots that look like chicken pox. Text reads “Being Sick as An Autistic Person”]

25: I have an eating disorder.

Trigger and content warning: eating, food, weight, eating disorder, bingeing, restricting, treatment, recovery.

I have an eating disorder.

It’s taken me a full year to reach a place where I can say that sentence out loud, but now that I have, I feel a tiny piece of its hold on me slowly peeling away. I was diagnosed well over a year ago, but have only started the nitty-gritty of treatment very recently.

So why am I writing about it on my blog?

Well, for one thing, my blog is a place that I can go to write what I’m feeling and it helps me to process things in a constructive way. In a big way, this space has always and will always be for me. A big part of Seeking Sara is unraveling myself and finding out who I am inside. (Alexa, play the Mulan soundtrack!)

But I also want to be open about it because if it weren’t for people in my life being open about their own struggles, treatments, and roads to recovery (including potholes along the way), I never would have been brave enough to seek help. So another massive reason I am being open about this topic is in order to reach out to others to say, “You are not alone.”

The last big reason I am writing about my disordered eating on Seeking Sara is that it is not unrelated to being Autistic. I began subconsciously, (then more consciously, but to my deep shame and suffering) using food, bingeing, restricting, and overall disordered eating to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life.

Bingeing has become a type of self-harm stim to me. Restricting has become a way to control at least something in my life when I so frequently am overwhelmed by the world around me, not to mention my various health issues and disabilities. But these are not healthy or productive ways to cope. The fact that I can see that now is not a small baby step, but a giant, giant leap toward my long marathon run toward recovery.

One reason I avoided seeking help for so long is the uncanny ability eating disorders have to convince you that they are no big deal. Cycles of denial and acceptance are pretty much guaranteed companions during anyone’s treatment and recovery. I have no doubts that I will struggle back and forth for months–and probably years–to come, but now that I know that and accept that, it makes it easier to cope.

So how did I decide I really did have a problem I needed to address?

I’ve known for a long time, but the final tipping point was a journal assignment my therapist gave to me. The prompt was, “What is your relationship with food like? Write a letter as if it were a real person.” The two images below are my letter to food.

(If you are using a screen reader, please click the images. Alt-text is attached.)
An image of a purple notebook page with text on it. The date reads January 1, 2019. Above the date is a branch with red buds. Text reads, "Dear Food, We need to talk. My relationship with you has been unhealthy for 18 years. It's true that I can't live without you, but sometimes you make me feel like I can't live with you either. You are nourishment, energy, life, necessity. You are addictive, controlling, an unhealthy coping mechanism. I need you. I love you. I hate you. I hate that I need you. You provide me with escape... and yet I can't seem to escape you. The solace you provide is temporary and leaves behind regret, frustration, and a shame.
The second page of the letter reads, "Where you soothe, you also blister. You are a gulp of cool water laced with poison. We need to talk. We have 28 years to evaluate--18 of them troubled. You know I won't ever leave you, but things between us are about to change. I can't leave, but I can loosen your hold on me. I will no longer use you as a crutch that feeds me lies and self-hate. We need to talk. Sara." Beside Sara's name is a graphic of a pen. Under her name is a branch with blossoming red flowers.

Was I shocked by what I wrote? Extremely. What started out as a seemingly-silly therapy homework assignment that I was doing only grudgingly soon pulled emotions up from deep within me as the words cascaded onto the page. What I expected to be a few lines or bullet points in my journal turned into a chilling look at how I really felt. It captured the push-and-pull, back-and-forth, ebb-and-flow love/hate relationship that I’ve been running from since I was 10.

But, like I said: Denial and acceptance are at constant war within me. The next day, I was back to the complacent “I’m fine” attitude. But this time… I had something to look back on. I looked at that letter and felt those same feelings rising up in me again. And suddenly… I couldn’t turn back. I couldn’t go back to believing everything was fine…

But more importantly, I didn’t want to.

So what now?

Well, I’m diving in to treatment head-first with my therapist, continuing to journal (no matter how silly a prompt seems), talking with my loved ones who have eating disorders, doing seemingly small things like asking doctors not to tell me my weight, and reading lots.

I’m cycling back and forth between two books:

The simple yellow cover of Body Respect: What conventional health books get wrong, leave out, and just plain fail to understand about weight. By Linda Bacon and Lucy Aphramor.

1) Body Respect by Linda Bacon, PhD and Lucy Aphramor, PhD and RD (Amazon link here).

The pretty yet simple white cover of Life Without Ed: How one woman declared independence from her eating disorder and how you can too. By Jenni Schaefer.

2) The 10th anniversary edition of Life Without Ed by Jenni Shaefer (Amazon link here).

Cycling between the two has been invaluable to me so far. Body Respect challenges our views of weight, fatness, calorie counting, dieting and more, while Life Without Ed shows me that I am not alone, shows me recovery is possible, and teaches me very practical techniques that I can use.

Getting to Know the Enemy

One of the most important things I have learned from Life Without Ed so far is the concept of naming my eating disorder. By doing this, I can begin to separate out thoughts and impulses that are genuinely mine and which are from the eating disordered part of my brain. It also gives me something to roll my eyes at and tell to go away!

One exercise I did once I named my disorder was to write down all the things it says to me. Once again, what I thought was kind of a silly activity turned into me easily writing a page and a half of terrible things that it says to me–and has done for 18 years. That was another eye-opening moment for me and one that will stick with me throughout treatment and well past recovery.

So there you have it. I have an eating disorder.

But I’m not terrified like I have been for years. I feel anxious. Sometimes I feel powerless. Sometimes I feel like I can’t do it. Occasionally I still feel denial. But now I know how to recognize these feelings and thoughts as products of my eating disorder, not myself.

I have an eating disorder… and I’m going to kick its butt.

A meme with a photograph of a sunny path through the woods. Text reads, "I have an eating disorder. I began subconsciously using food to cope with sensory overload, to avoid meltdowns and shutdowns, and to find some sense of control in my life. As I start down my long path to recovery, I am reaching out to others to say "You are not alone."I have an eating disorder...and I'm going to kick its butt."

[Featured image, image description: A photograph of a sunny path in the woods with shadows from the trees stretching across it. Text reads “Starting Down My Path to Recovery. Seeking Sara.”]

Video: Meltdowns & Shutdowns

Did you know that I have a Seeking Sara YouTube channel?

I make videos rather infrequently but am happy only making a few a year since writing is the medium that works best for me! Please enjoy.

What do I experience in a meltdown? What is a shutdown? What are pillars and how does paying attention to them help lessen my meltdowns/shutdowns?

 

Also, in case you missed it, I was recently published on both Thinking Person’s Guide to Autism (here) and The Mighty! (here)

 

23: Sensory Series (2) “Picky Eater”

For as long as I can remember, I’ve been ashamed of what I do and don’t eat. The stigma of being a “picky eater” has followed me around my whole life, bringing comments (and no small amount of exasperation) from family, friends, wait staff, and strangers alike.

Recently I’ve been examining why I struggle with certain foods and have come to the same conclusion as I have with much of my post-diagnosis self-exploration:  I’m actually incredibly strong and my experiences are real and valid.

Why am I so “picky”? Well, if you could experience my senses for a few hours, I bet you’d be more understanding, less judgmental, and I’m fairly certain you’d stop using the word “picky” pretty fast. Often times, I want desperately to like a food, to be able to order anything at random, or to just eat whatever is put in front of me without hesitation. But for me, food is almost always a relentlessly overpowering experience.

It’s not just taste that’s overwhelming–it’s texture, smell, color, consistency… What if I told you certain foods literally hurt to eat? That some trigger vivid memories that are disorientating and distressing? That some foods make me nauseous and panicky? Throw in IBS, general stomach and digestive issues, multiple food allergies and sensitivities, and it’s actually pretty impressive that I eat at all.

TASTE

I really struggle to eat bitter, sour, or spicy foods. The problem is, what you consider overwhelming is likely not what I do. Remember, all of my sensory input is dialed up and extra-sensitive. I’m not just being picky; I’m not overreacting. I really am experiencing things more intensely than most people. What you might find pleasant with just a hint of a kick might feel like an absolute assault on my senses.

Another factor is that sometimes my sensory input seems to go haywire somehow and, for example, a bitter taste might register just like bile to me. No one else eating the same dish is having the problem, but I literally cannot eat another bite because it legitimately reminds me of throwing up.

TEXTURE

Texture is a huge factor as well. Texture no-go’s for me include: peaches, coleslaw, celery, Japanese konyaku, warm peanut butter, etc. I can’t really explain why some of these things are difficult for me, but the sensation can be so uncomfortable that my jaw locks up. This can be a full-body experience, causing pain, discomfort, chills, headaches, and tics if I’m required to eat something for whatever reason.

TOO MANY TASTES AT ONCE

Even if I like certain tastes, too many at once is also overwhelming. There are not many meals I order out that don’t include me saying, “I’d like the (meal), but without (list of ingredients). So basically just the (stuff I still want).” The things I take off make the difference between me being physically able to eat the dish and literally not being able to eat it without melting down or extreme distress.

IN CONCLUSION

I debated making a list of all the foods I struggle to eat, but decided against it. Maybe some day I will, but for now, I still struggle with embarrassment from a lifetime of stigma related to what’s difficult or painful for me to eat and I’ve decided to focus elsewhere.

I’m currently on a journey of self-acceptance and I’m finding it more productive to focus on my “Can Do” list than my “Can’t Do” list. I’ve come a long way in trying new foods, and I’m working on becoming more accepting that 1) I function differently and it’s okay not to eat foods that are difficult and 2) it’s actually impressive what I do eat and I should give myself more credit.


BONUS:

STIMMING THROUGH FOOD

While tracking what foods are difficult for me to eat, which I refuse to eat, and which I love to eat, I noticed that I draw on certain foods as a massive comfort; I actually stim by eating these foods, usually in a ritualistic manner. They include foods like applesauce, crackers, pretzels, oatmeal… notice a pattern? When I’m exhausted or overloaded, I can’t deal with any intense or unpleasant colors, smells, textures, or tastes. Eating these familiar, bland foods is a source of comfort and helps me calm down. Now that I have identified that I am stimming through food, I have consciously begun working on stimming in other more healthy ways (allowing myself to rock, hand flapping, touching soft things, listening to a song on loop, etc.) to try to avoid stimming through binge-eating. (See 25: I have an eating disorder. for more on that.)

Click here Sensory Series Part 1, 16: Sensory Series (1) Auditory.

 

[image description: A “Swiss Cheese” Plant, (monstera friedrichsthalii). The plant has huge green leaves that have holes slashed through them, hence the resemblance to Swiss cheese.]